Autism came into his my son’s life as an uninvited guest. It affects the way he communicates, behaves, and socializes. It affects the way he learns and his ability to reach developmental milestones. Navigating the service delivery system that is in place to help him has been frustrating, but I know that I can never give up.
As parents we depend on providers to navigate the choppy waters of autism parenting. We acknowledge that we can’t do it alone. However, we end up feeling disillusioned, angry, and frustrated when providers continuously drop the ball.
On any given day, a parent of a child with autism may spend hours calling insurance companies, support service agencies, therapists, psychologists, psychiatrists, social workers, and direct support staff. This can be challenging, especially if the parent works full time. I won’t even get into the special education aspect, which adds another layer of complications to our hectic lives.
I came up with this list because I believe that it can help providers understand what parents really need from them. So here we go:
Return our Phone Calls
No one likes to be ignored. When a parent reaches out to you for help, please call them back. We understand that you may have a heavy caseload but that is no excuse to ignore someone who is constantly reaching out to you for help. Families deserve more and we need to feel that our children are not just names on a sheet of paper. I would like to think that when someone enters a career that services people with disabilities they do it because they have genuine compassion for our families. Maybe I am being naïve and it is just a paycheck. Either way, please return our calls.
Our children have many needs and this is why we are desperate to get them services. We understand that wait lists are long. We understand that many families are vying for the same spots. Despite these obstacles, we simply ask that you be persistent. When we reach out to you to request a service for our child, make as many calls as you need to make to set things in motion. Follow up and follow through. If one agency does not have a space, try another one. Keep trying until you get what is needed for that family. Trust and believe that many parents are doing the same. We sincerely ask that you do your part.
As a provider serving the disabilities population, you have to learn your field. Know where the services are. Attend conferences and workshops. Familiarize yourself with agencies servicing the families you serve. Learn how the system works. These strategies can arm you with a wealth of knowledge that you can pass on to families. It can also make your job easier because you become a true source of support and information for desperate families.
If you do not know something or you made a mistake, be honest. Your transparency will go a long way in helping to fix the situation. If you are a direct support worker, parents also need you to be open and honest with them. We look to you as a source of relief not stress.
Work with Us
Sometimes parents get frustrated with you but we do appreciate you. We may yell at you, but know that it comes from a place of frustration. It comes from a place of desperation from trying so hard and getting little to no results. Sometimes we just do not know where else to turn because so many doors have been slammed before us. You could’ve chosen any other career but you chose to work with families of children with autism and other special needs.
Thank you! We implore you all to work with us. We are all on the same team.
BMWK: How can providers make your life easier as a parent of a child with autism? Feel free to share this post with the providers in your life.